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Doc Martin
It mentioned
Polycythaemia
Rubra Vera. First time I've ever heard it mmentioned in a tv programme. Hope you're all keeping well.
It mentioned
Polycythaemia
Rubra Vera. First time I've ever heard it mmentioned in a tv programme. Hope you're all keeping well.
mark382
in
MPN Voice
4 years ago
Blood levels after trauma
I have Jak2
polycythaemia
. I had a nose accident in April and lost lots of blood. Since then my haematrocrit (.29) and haemoglobin (91) are low and not recovering to their usual levels (.44 and 135). Had few mixed messages whether levels will stabilise and how quickly.
I have Jak2
polycythaemia
. I had a nose accident in April and lost lots of blood. Since then my haematrocrit (.29) and haemoglobin (91) are low and not recovering to their usual levels (.44 and 135). Had few mixed messages whether levels will stabilise and how quickly.
SueBas
in
MPN Voice
4 years ago
Corona Virus Confusion
Hello, I am 51 and have
polycythaemia
vera, treated with hydroxy and aspirin. After weeks of trying I have received a letter from my haematologist stating that I am at no more at risk from the corona virus than people who dont have my condition and that I only need to take the standard precautions.
Hello, I am 51 and have
polycythaemia
vera, treated with hydroxy and aspirin. After weeks of trying I have received a letter from my haematologist stating that I am at no more at risk from the corona virus than people who dont have my condition and that I only need to take the standard precautions.
Ijbefc
in
MPN Voice
4 years ago
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Mpns info
I have
polycythaemia
Ruba Vera and been on hydrea 500 for 16 months.
I have
polycythaemia
Ruba Vera and been on hydrea 500 for 16 months.
Polyruba
in
MPN Voice
4 years ago
Update!
I know I haven’t chatted here much but I’ve been coming to this forum everyday since I heard the words ‘
Polycythaemia
Vera’ and I can’t thank everyone enough for the constant reassurance it gave me, I have pretty chronic anxiety in general that plagues me everyday about even the smallest things so this
I know I haven’t chatted here much but I’ve been coming to this forum everyday since I heard the words ‘
Polycythaemia
Vera’ and I can’t thank everyone enough for the constant reassurance it gave me, I have pretty chronic anxiety in general that plagues me everyday about even the smallest things so this
Beerye1
in
MPN Voice
4 years ago
The Myeloproliferative Neoplasm Landscape: A Patient’s Eye View
Jonathan Mathias ABSTRACT Patients with myeloproliferative neoplasms (MPNs), a group of rare haematological conditions including
polycythaemia
vera, essential thrombocythaemia, and myelofibrosis, often experience a range of symptoms which can significantly impact their quality of life (QoL).
Jonathan Mathias ABSTRACT Patients with myeloproliferative neoplasms (MPNs), a group of rare haematological conditions including
polycythaemia
vera, essential thrombocythaemia, and myelofibrosis, often experience a range of symptoms which can significantly impact their quality of life (QoL).
socrates_8
in
MPN Voice
4 years ago
CORONA VIRUS
Husband is JAX-2-V617 mutation positive MPN consistent with
Polycythaemia
Vera Ruxolitinib 15grms twice a day. Is he classed in the current situation as vulnerable.
Husband is JAX-2-V617 mutation positive MPN consistent with
Polycythaemia
Vera Ruxolitinib 15grms twice a day. Is he classed in the current situation as vulnerable.
waddles22
in
MPN Voice
5 years ago
Awaiting Diagnosis
My GP didn’t say much except telling me she’s never seen it before in someone my age and mentioned the term ‘
Polycythaemia
Vera’ and referred me to a haematologist, I see him on 23rd of April. My white blood cells are fine I believe, platelets were at 180.
My GP didn’t say much except telling me she’s never seen it before in someone my age and mentioned the term ‘
Polycythaemia
Vera’ and referred me to a haematologist, I see him on 23rd of April. My white blood cells are fine I believe, platelets were at 180.
Beerye1
in
MPN Voice
5 years ago
New Study: Predicted Survival in Polycythemia Vera Patients
https://www.practiceupdate.com/C/96795/56 British Journal of Haematology ASXL1 Mutations, Previous Vascular Complications and Age at Diagnosis Predict Survival in 85 WHO-Defined
Polycythaemia
Vera Patients Br. J.
https://www.practiceupdate.com/C/96795/56 British Journal of Haematology ASXL1 Mutations, Previous Vascular Complications and Age at Diagnosis Predict Survival in 85 WHO-Defined
Polycythaemia
Vera Patients Br. J.
JT_Marlin
in
MPN Voice
5 years ago
Polycythaemia vera, Hydroxycarbamide and possible side-effects
Hi all, I am 63 and have been on Hydroxycarbamide, aspirin, cetirizine and omeprazole since 2017 when I was diagnosed with PV. I am plagued with urinary infections (UTIs) sometimes as much as once a month. I have had loads of tests to see if there are local eg bladder problems and there aren’t. Does
Hi all, I am 63 and have been on Hydroxycarbamide, aspirin, cetirizine and omeprazole since 2017 when I was diagnosed with PV. I am plagued with urinary infections (UTIs) sometimes as much as once a month. I have had loads of tests to see if there are local eg bladder problems and there aren’t. Does
Barb17
in
MPN Voice
5 years ago
COVID-19 Outbreak: Advice for Patients with Myeloproliferative Neoplasms (MPNs) 30th March 2020
The
government’s general advice
may be found here: https://www.nhs.uk/conditions/coronavirus-covid-19/ The
Myeloproliferative Neoplasms
(MPNs, including Essential Thrombocythaemia,
Polycythaemia
Vera and Myelofibrosis) are a group of blood cancers.
The
government’s general advice
may be found here: https://www.nhs.uk/conditions/coronavirus-covid-19/ The
Myeloproliferative Neoplasms
(MPNs, including Essential Thrombocythaemia,
Polycythaemia
Vera and Myelofibrosis) are a group of blood cancers.
Mazcd
MPNVoice
in
MPN Voice
4 years ago
Diagnosis and Management of Polycythaemia Guidelines
See https://b-s-h.org.uk/guidelines/guidelines/diagnosis-and-management-of-
polycythaemia
-vera/. Also, would like to say I am looking forward to the Sheffield MPN Forum. I went to one in London a few years ago and found it useful and interesting. The NHS at its best. Regards
See https://b-s-h.org.uk/guidelines/guidelines/diagnosis-and-management-of-
polycythaemia
-vera/. Also, would like to say I am looking forward to the Sheffield MPN Forum. I went to one in London a few years ago and found it useful and interesting. The NHS at its best. Regards
PVPVPV
in
MPN Voice
5 years ago
Humira /Benepali
I am trying to be positive that it will work but I have lung cancer and
polycythaemia
, (blood cancer) which is a contra-indication to Anti-TNF. Also, I already suffer some of the side effects i.e. high blood pressure, skin problems and blocked and runny nose with occasional nose bleeds.
I am trying to be positive that it will work but I have lung cancer and
polycythaemia
, (blood cancer) which is a contra-indication to Anti-TNF. Also, I already suffer some of the side effects i.e. high blood pressure, skin problems and blocked and runny nose with occasional nose bleeds.
penelopejane
in
NRAS
5 years ago
One-to-one buddy support
leukaemia (AML)
Acute lymphoblastic leukaemia (ALL)
Acute promyelocytic leukaemia (APL)
Chronic lymphocytic leukaemia (CLL)
Chronic myeloid leukaemia (CML)
Chronic myelomonocytic leukaemia (CMML)
Hairy Cell leukaemia
Essential thrombocythaemia (ET)
leukaemia (AML)
Acute lymphoblastic leukaemia (ALL)
Acute promyelocytic leukaemia (APL)
Chronic lymphocytic leukaemia (CLL)
Chronic myeloid leukaemia (CML)
Chronic myelomonocytic leukaemia (CMML)
Hairy Cell leukaemia
Essential thrombocythaemia (ET)
HAIRBEAR_UK
in
Leukaemia Support
5 years ago
Polycythaemia Vera
I'm a 54 year old male who was diagnosed with
Polycythaemia
Vera, Exon 12 strain some 4 years ago now. It has been controlled with first asprin, now clopidogrel due to chronic acid indigestion. I have venesections when the level is too high and iron tablets when I feel tired and breathless.
I'm a 54 year old male who was diagnosed with
Polycythaemia
Vera, Exon 12 strain some 4 years ago now. It has been controlled with first asprin, now clopidogrel due to chronic acid indigestion. I have venesections when the level is too high and iron tablets when I feel tired and breathless.
mrbrindle
in
MPN Voice
5 years ago
SMC decision regarding Ruxolitinib (Jakavi) for PV patients in Scotland
We are very pleased to announce that following a full submission made to the SMC (Scottish Medicines Consortium), a decision has been made to accept Ruxolitinib (Jakavi) for use by NHS Scotland for patients with PV (
polycythaemia
vera) who are intolerant to, or cannot be treated with Hydroxycarbamide
We are very pleased to announce that following a full submission made to the SMC (Scottish Medicines Consortium), a decision has been made to accept Ruxolitinib (Jakavi) for use by NHS Scotland for patients with PV (
polycythaemia
vera) who are intolerant to, or cannot be treated with Hydroxycarbamide
Mazcd
MPNVoice
in
MPN Voice
5 years ago
Christmas message 2019 from the team at MPN Voice
support the study with a donation via the JustGiving page https://www.justgiving.com/campaign/charity-mosaicc-study Mithridate, a phase III, randomised, open-label, Multicenter International sTudy comparing ruxolitinib with either HydRoxycarbamIDe or interferon Alpha as first line ThErapy for high risk
polycythaemia
support the study with a donation via the JustGiving page https://www.justgiving.com/campaign/charity-mosaicc-study Mithridate, a phase III, randomised, open-label, Multicenter International sTudy comparing ruxolitinib with either HydRoxycarbamIDe or interferon Alpha as first line ThErapy for high risk
polycythaemia
Mazcd
MPNVoice
in
MPN Voice
5 years ago
Can I ask my hairdresser to dye my hair if I take Hydroxycarbamide? I have had Polycythaemia Vera for 2 years.
I’m not sure if it’s ok to get my hair dyed. Does anyone do this whilst taking Hydroxycarbamide and have you had side effects please?
I’m not sure if it’s ok to get my hair dyed. Does anyone do this whilst taking Hydroxycarbamide and have you had side effects please?
SusiePlums
in
MPN Voice
5 years ago
Does anybody else have Polycythaemia Vera with CAL R and TET2 mutations? My doctors seem to be very confused..
Hey everyone, My name is Erik I’m new here and if anybody has any info they could share with me about this, as I was just diagnosed in December 2018, but haven’t been feeling good for a very long time I would appreciate it!Thank you in advance.
Hey everyone, My name is Erik I’m new here and if anybody has any info they could share with me about this, as I was just diagnosed in December 2018, but haven’t been feeling good for a very long time I would appreciate it!Thank you in advance.
Emurr
in
MPN Voice
5 years ago
Just to say hi
I was diagnosed with
polycythaemia
14 years ago age 40. Managed with hydroxy carbamide and aspirin . All usually ok ..sometimes a bit of a wobble which usually straightens itself out. Recently I had a result which included a reduced white cell count for the first time .
I was diagnosed with
polycythaemia
14 years ago age 40. Managed with hydroxy carbamide and aspirin . All usually ok ..sometimes a bit of a wobble which usually straightens itself out. Recently I had a result which included a reduced white cell count for the first time .
redvanman
in
MPN Voice
5 years ago
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